notes & essays on daily life with terminal cancer

Welcome to Livingly Dying

Welcome to a space dedicated to the process of livingly dying – staring at imminent mortality and yet residing in the world of the living. More and more of us are finding the words terminally ill and chronic illness co-mingle. We are living longer and better despite a dire diagnosis/prognosis. But the path is not easy.

We bounce between denial, deep despair, and sheer optimism. All the while, many of us face treatment regimes that whittle us down and a current culture in the United States unfamiliar with sitting with death and dying. These writings will be of most value for:

a. people navigating the balance of living when told you are dying

b. people pursuing creative approaches, especially those stimulating our immune systems to fight back the diseases trampling us

c. people interested in witnessing one person living each day with terminal illness.

Livingly Dying Essays, Clinical Trial & Creative Approaches, and Medical Industrial Complex Woes make up the three categories on the lower right column of the front page allowing you easy access to content that most interests you. To receive new posts click the follow button in the upper right column. I share my journey to support collective efforts to live well while dying. I am feeling my way out loud. Thank you for joining me. Comments are always welcome, in fact, they cheer on the process. If you scroll below this welcome, you will find the running narrative with most current post on top.

About marcy westerling

I am a long time community organizer with a passion for justice and founded the Rural Organizing Project in 1992. Derailed by a Stage IV Ovarian Cancer diagnosis in spring 2010, I have stayed in treatment since then. I am learning how to embrace livingly dying and hope that by starting a Phase One immunology clinical trial at UPenn in spring of 2013 I will have more time to find the sweet spots of thriving while terminally ill.

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Finally signed on to the blog. Wow! It is beautifully designed! And your essays are as eloquent, honest, and thought provoking than ever. I feel privledged that you are sharing this journey. Thank you Marcy. Love you, miss you.

Your comment on my blog post “The Disabled: Different Yet the Same” at Greatgourdini.wordpress.com brought me here. I cannot fathom what it must be like to stare one’s mortality in the face as one copes with a terminal diagnosis. As I have written elsewhere on my blog, we cannot control how we leave this life, or when. The only thing we can do is do our best to live whatever time we have between now and then as well as possible. It seems as though you are succeeding on that score, and I congratulate you. None of us is perfect; we all have moments we wish we could do over (better, this time! ;-D) But it does seem as though, as you reflect back on your life, it has been more with fondness than with regret, for which I also congratulate you.

Thanks for visiting my blog, keep up the great work here for as long as you feasibly can.

Dear Marcy, Thank you for your blog. In case it helps anyone…My mum was orphaned before 5 years old so I trained as a teacher and counsellor. I spent the last 6 years interviewing people who had their parent/s die when they were kids. I found out the most important things people wished they knew from or about their dead parent which would have helped them or given them solace in life. I made a free video-recording, question-prompting app so we can all record ourselves for those closest to us – you can edit the questions to suit you – all good wishes, Gaby Eirew http://www.RecordMeNow.org

Unquestionably believe that which you stated. Your favorite reason seemed to be
on the web the simplest thing to be aware of. I say to you, I definitely get annoyed while
people think about worries that they just don’t
know about. You managed to hit the nail upon the
top as well as defined out the whole thing without
having side effect , people can take a signal. Will probably be back to get more.
Thanks

Wow. I like to check out the blogs of people who coment on my posts, and since my blog (The Bullshit-Free Zone) is a place for crass language, outrageously incendiary claims, satirical ridicule and offensive humor, I generally expect to find othe cynics like myself commenting on the blog. But I did not expect to find this. I really admire what you’re doing. My mother lasted seven months after her stage IV cervical cancer diagnosis, and she kept on acting as if she was gonna be okay. She kept a very positive attitude, but I don’t think she ever actually confronted the reality of mortality. What you’re doing is so constructive, and to have made it three years doing this is truly a blessing, already beating the odds that weren’t in your favour to begin. Rest assured that I’ll keep reading until the day the posts stop coming!
Best,
T.I.

And I love your approach, including your ability to admit that yes, the day will come when I die. I fret the societal pressure we give people to stay positive in a one dimensional way when, in fact, there is nothing more appropriate then taking time to consider approaching death. It’s a gift to have such time. Women especially tend to never give themselves that time because they feel their job is to stay strong.
warmly, marcy

Do keep us updated on your prognosis. I find myself cheering for cancer patients fighting the good fight, trying to beat it as long as they possibly can. Even though my mom wasn’t able to make it the five years like I’d hoped, I feel a bit of joy every time I hear of someone else getting closer to that mark.

It is the best time to make some plans for the long run and it’s time to
be happy. I’ve read this put up and if I may I want to suggest you some interesting things or advice.
Perhaps you could write subsequent articles relating
to this article. I desire to read more things about it!

Thank you so much for your comment and encouragement. The August edition of the Quarterly Yes! magazine will have an essay by me on the topic and now that I am getting a break from chemo and travel, I do hope to write some more.

Also, if you scroll down the right side of the home page, you will find a category called Livingly Dying Essays which does include some other writings.

Marcy,
I read an article by you in the yes! magazine that a friend gave me; i was so excited! I just followed Lisa Adams and your blog; i was trying to figure out how to send you an email but couldn’t….
i blog at helpforhealing… i have a raw and honest style of writing as well and loved what you wrote; i wrote a book about my husband’s terminal illness and am soon publishing my second book on rebuilding our lives after his death….

anyhow, if you want to guest blog or interview with me i would love it; if you were interested in reviewing my second book and writing a blurb for the back cover, i would also be honored!

I found your blog through a reply on my poetry blog and I haven’t had time to look around a lot yet, but I’m glad for what you are doing.

My father is terminally ill. He was given a stage IV cancer diagnosis very suddenly a few months ago, and they say he doesn’t have long, but we don’t know how long. It’s metastasized pretty much everywhere it can. My mother, his primary caretaker, has severe myasthenia gravis (or something very like it) and a boatload of other diagnoses that mean that until my father was diagnosed, we were sure she was the one who was going to die. The added responsibility of taking care of my father is taking a toll on her. Her muscles weaken with use, including breathing muscles, and she already stopped breathing and landed in the ICU once this year. She also has a diagnosis of pulmonary hypertension, which means that regardless of what happens she’s unlikely to live more than a few years..

My mother and I are both something that I don’t think they have a word for. I call it “precariously ill”. It’s not the same as having a chronic illness that isn’t going to kill you. And it’s not the same as having a terminal illness where they know it’s going to kill you and they have at least a vague timeline. It’s where you have a chronic illness that could — easily — kill you tomorrow, or kill you ten years from now, or (but less likely) let you live to ripe old age if you’re lucky.

In my case, the way it works is this: My gastroparesis causes bile buildup in my stomach, and the paralysis of my stomach means it won’t drain into my intestines properly. So the bile goes up my esophagus. If I’m sleeping with my bipap on (which I need for central and obstructive sleep apnea), the bile gets blown straight down into my lungs. My bronchiectasis ensures that I get aspiration pneumonia and need lots of antibiotics to have even a chance of clearing it. (I always get an infection even if I start antibiotics the very first day I aspirate.) My adrenal insufficiency then turns the infection into a potential adrenal crisis. And all the coughing makes my lung muscles weak from the myasthenia (or whatever it might be) that I inherited from my mom, which in turn can cause breathing-related crises of their own. All of this combines into a situation where I could live through it, or I could die.

Luckily for me, I’m on a lot of treatments that have changed things for me. Without treatment for the (only recently diagnosed) adrenal insufficiency, I would probably be dead by now, and certainly within the next year or two. Between a feeding tube and steroids I’ve got a good chance of making it to old age, because I now only aspirate a few times a year instead of a few times a week.

But I’m still precariously ill. I’ve still had so many close brushes with death that I feel like I know Death as a person, a presence, not just a concept. I still feel like there are very few people I can talk to about this, because most people don’t want to think about death. Right now I’ve been talking to my father about it a lot, because he’s been afraid of death, and I am not. I told him that hanging onto love is the most important thing you can do when you’ve reached the point when you’re dying, and that this will take care of a lot of the fear.

But I sometimes I feel like I live in another world from people who haven’t had close calls with death on a regular basis. Before the adrenal insufficiency, myasthenia, and gastroparesis were diagnosed and treated, I was in and out of the hospital a lot, and I was always (because of adrenal insufficiency in particular) much sicker than I should have been for the conditions I was actually hospitalized for. Sometimes I felt so weak that it seemed like keeping my heart beating was an exhausting challenge that I longed to sit down and rest from. But I didn’t sit down and rest, and I’m still here. My doctor says it’s amazing I’m alive, especially because many times I belonged in the ICU but, lacking a proper diagnosis, was not put there. So I got very accustomed to the feeling of having Death sitting in the room with me, and I came to regard it as a friendly presence, not an unfriendly one. Not one I wanted to shake hands with, exactly, but not one to be feared when my time came.

Being properly diagnosed, I feel like has given me a second chance at life that most people as sick as I was never get. My doctor says he’s never seen a turnaround as huge as mine was when we got me on steroids for the adrenal insufficiency (I was bedridden for six years and used a powerchair that tilted me back for medical appointments… now I walk with a cane and haven’t even been using my manual wheelchair). By the time they found it, I’d been sick for years and they couldn’t find any cortisol or ACTH in my system. They said it must have been there, because I was still alive, but there was too little to measure.

And anyway… sorry to tell you my whole story here. But my point is, I think it’s really important to have a place where we can discuss death in a forthright way, as people who are dealing with it in one way or another. Until recently I didn’t think I’d live to see my forties, and felt like I spent more time around death than I did around living human beings. Now my parents are dying, and I’m seeing it from the outside. And the stress of my parents’ death is making my health precarious again, because stress lowers cortisol and my body doesn’t make cortisol anymore, so I’m constantly having to adjust my steroid dosages to avoid a stress-induced adrenal crisis. It all feeds into itself.

But I feel like those of us who have faced death in a serious way, or are facing death in a serious way right now, are forced to see parts of the world that most people are spending their entire lives carefully ignoring. And it’s hard to relate to people, it’s hard to hold conversations about death, when nobody wants to hear about death. Everyone seems to want to pretend they’re immortal, right up until they’re forced to recognize that they aren’t. And the parts of the world that death opens up aren’t spoken of, because of this.

So I haven’t seen much of your site yet, but just the idea of a site where people talk honestly about dying is refreshing to me as a precariously ill person dealing with terminally and precariously ill family members and loved ones.

Thank you, and my best to you too! For me, the heart of precarious illness is “I could aspirate and die tonight. Tonight, any night. Any time. Or I could live to be eighty. And I don’t know which will happen. So I’d better live each day as well as I can, so if I died, I would be satisfied.” And I’ve found that whenever I’ve gotten close to death, the question that always haunts me is “Have I loved enough? Have I expressed that love well enough?” Everything else feels petty and foolish at those moments when I can’t breathe and don’t know if I’ll catch my breath again. But love, love matters. That’s what my father and I are finding out, and we’re finding this connection between us, this love, that we’d never tapped into before. It feels like such a shame that he had to be near death before this connection could occur so strongly for both of us. We loved each other, but now the love flows freely in a way it never did before. He’s getting a transfusion tonight, so I’m worried. But I know that no matter what happens, he is loved, and he knows that. I only wish I lived close enough and was well enough to travel.